Iftikhar Zia, together with the rest of the family, has been Zoyeb’s main support system. Zoyeb suffers from a rare neurological condition called Ataxia. Iftikhar on the journey and the accomodations required in schools, colleges to support Zoyeb’s drive for professional success.
Please tell us about your son’s condition
My son was diagnosed with Ataxia at 16. It is a neurological disorder affecting the balance causes poor coordination of the limbs poor gait movement slurs the speech and affects the eye movement etc.
What were the early symptoms?
It started with some poor coordination of the limbs and slight loss of balance. He was good at sports and swimming and he started realizing that he was not able to run and play football like before and was finding it difficult to cycle. His lack of interest in football and swimming was becoming a concern to us. And after sometime we realized that there could be something wrong, and that was when we started the medical check ups
Is there any history of neurological disorder in your family?
No. And we could not trace in the earlier generation too.
How did you go about supporting your son manage the condition?
The news of a Rare Disorder, which could be progressive and degenerative with possibly no medication to cure to reverse or to stop progression – was difficult to comprehend and accept immediately. It was not just his condition which had to be managed, there was a bit of a slowdown in myself too. When the Doctors said – rare, no cure, progressive, there was a panic mode for all of us. We started the medical rounds, labs and tests. And at the same time we wanted him to finish his schooling too. He was just starting his XII std, and there were expectations from him and us as parents.
There was a brief period when the school also did not know why he was taking leave continuously. There was a time when my son refused to go to school anymore. He had sort of decided to give up.
Luckily it was only for a short period. Then he came to terms with the condition and continued his schooling. The school was very understanding when they came to know about the situation, and they gave maximum support to help him clear his Board Exams.
It was quite a difficult situation for my son. But he understood that there was an immediate acceptance and support from the family. He started thinking in terms of what he can achieve given his health condition. I had a bit of multi tasking to do, and then dream and plan something which would help him in his education and career. He was at an age where coupled with the worries, it would have been difficult for him to come up with a reachable goal. And I had to assure him that we would go forward together in this difficult time.
What were the main challenges you faced?
I was in my regular job and my monitoring as far as education was concerned was the quarterly shouting once the results came. My parenting methodology was fairly simple – if I was not called for the Parent Teachers Meeting after every exam, I safely assumed that my Son was fabulously brilliant.
When the issues cropped up, things changed drastically. I had to assist my son to the school and back daily. There was a continuous running between Doctors, Hospitals and Labs. There was too much negativity surrounding us. There was no clear understanding on the health condition and we went on doing various tests. Since Ataxia has many variants, available tests were done one by one, and repeated at different places. Out of the known variants – tests are not available for some.
I had to continue to take him to college and back. As the disorder progressed, my son needed support to walk and use the stairs.
I managed for year or a little more – juggling between my full time job and concentrating on my son’s education and medical condition. There was a situation when I had to decide – either me and my career or my son’s education and his career. I felt it would be better if I concentrated on my son. I gave up my career and continued doing a part time job or odd jobs.
There was a financial strain because of the running around and the various tests, there was a strain on our health – physical and mental, and there was a constant negativity.
My son was also going through a difficult situation. He had moved away from his social as well as friends circles, and at times was going through depression.
But, with all the difficulties around, my son was beginning to test out his strengths. He overcame the thoughts and emotions, and in a short span of time started his journey towards achieving his dreams and goals. Again, there was an immediate change. But, this time – it was back to the point where he had signed off. He was back to his jovial level, with his sense of humor and with his interests intact.
Instead of playing football – he started going to watch the matches. His friend circle was back , and his cousins chipped in to take him around - to movies, malls, and matches etc.
I would not say I became weak because of my son. But I can surely say - I gained strength because of him.
How difficult was it to get your son going in his studies and his profession?
It has been a difficult journey.
A Rare Disorder is not known or understood, and people think – either we are not treating, or are not seriously attempting to cure or in worst case scenario may be thinking we are faking it.
School was very helpful, and supportive. His Principal and Teachers gave maximum support. When he moved on to his College for his BSc Zoology, the College also had to be told about his health issue. The College again was very helpful. His Professors, HOD and Principal were very motivating and helped him in their available capacities.
It was not easy for him to continue his daily activity. His handwriting slowly became ineligible, and with even the extra hour for writing his exams, he was unable to complete the paper.
Since Ataxia is not listed in the list for PwD (People with Disabilities) getting a writer for him to write his exams was very difficult. It was only in his MSc final semester that he managed to get permission from the board for use of a writer.
He completed his BSc, MSc and MPhil in Zoology, and did a correspondence BSc in Psychology. He appeared for an Eligibility Test for Professor’s post and cleared the same.
The College where he did his studies was considerate enough to give him a chance to perform too. He went through the proper channel for applying for a Post of Asst Professor when the advertisement appeared, went through the selection process, and the college selected him for the advertised post. He currently works as an Assistant Professor of Zoology, and the college has been helpful in planning his lectures on one floor, instead of making him go up and down the floors every day. The office staff and his students help him around in the college.
Though maximum effort and determination has been Zoyeb’s, the attitude and the support of those around him in the professional space has helped him continue with his education and career.
His next plan is to continue with his PhD. He is exploring the topics, mentors and facilities. Hopefully he should be starting soon.
Thinking and documenting the difficulties we faced or face would be a baggage of negativity which we would have to lug around. This would slow down his future plans. We have relied on our strengths while respecting our weaknesses.
Stories from persons with Rare Disorders would be nearly the same. The helplessness, the financial drains, the continuous medical runs no support no diagnosis etc would be similar. Since number of people of one particular rare disorder would be less, there is not much connectivity. The medical fraternity addresses only the medical side, but there is life beyond this. Expecting the person to continue performing despite the difficulties would not be right. There are quite a few who do this too, but the percentage would be very less. Lot many give up after a few attempts.
Everyone has some special talents, multiple talents also. But in the daily routine of life, we do not get a chance to explore or pursue. But, when a person is challenged, it would really help if these talents are tapped and nurtured. Parents play the most important role, but they have to be equally supported by the extended family, society, Govt and policies.
Is your son on medications? And were there any side effects?
Initially he was on neuro medicines which were more like vitamins. There were side effects like sleeping more and vomiting, etc. After some time, he got used to them. Since there was no improvement, we did move on to various other fields of medication.
What kind of specialists do you consult for your son and how often?
Mainly Neurologists and other Therapy specialists.
What are the least understood aspects of Ataxia?
The progress and what it would affect and to what extent is not fully understood. The rarity and the variants make it difficult for the medical fraternity to also give an idea. And it varies from person to person, depending upon how the person is continuing to do the therapies. How occupied is the person’s mind also matters. Inactivity could make things worse.
Since this is a type of an Invisible Disorder – just looking at a person seated, one may not be able to understand that he or she is challenged. When one walks around with the support of someone, it would look odd. Ataxic walk is also called as Drunken Sailor Walk. Walking around with support is a kind of exercise, though they become dependent. Use of a wheelchair would make a person independent but unfortunately would speed up the degeneration.
It becomes difficult to keep explaining to everyone, why support is given, why not on a wheelchair and what about tomorrow
Are there any support groups in your city? If you are a part of any, does it help?
Support and Help groups play an important role. We are in touch with a couple of persons with this disorder, but there are no support groups in the city. Both me and my son are a part of ORDI – doing our bit to create an awareness for Rare Diseases and Disorders in Chennai / Tamil Nadu. I am connected with various others groups – though not rare disorders. My Son is very keen now on motivating people especially students facing similar challenges.
Have you had to make some changes to your lifestyle because of the situation.
I gave up a full time job which I was in for a long time. I managed to juggle odd jobs and a friend of mine helped me out by giving me an opportunity to work on a part time basis. My lifestyle went through a complete change an overhaul. I did regret for a very short period as I knew I was making things difficult for myself and the family financially.
But by God’s grace – my family supported my decision. My son took in this change too gracefully. The change in lifestyle, the work, starting again fresh did not upset me. I believed I was coming down the stairs not to get away, but to climb another flight of stairs. The Me Ver 1.0 had a good run and I was sure The Me Ver 2.0 would be equally good. My son’s performance gave me back the time and energy I invested. His achievable targets and the good long term goals he has, have kept me pepped up.
Failures losses and disasters could happen to anyone, which could upset the lifestyles. And some are blessed to start afresh again.
There were a few lifestyle changes which came up – like socializing, family together, and events. We did not disappear from the scene, but rather started prioritizing. My Son never hesitated making an appearance and we never hesitated to take him along for every occasion which we attended.
The period of about 10 years till now which I have been away from, the main stream as far as business and career is concerned, will be hopefully regained when The Me Ver 3.0 starts.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
Yes, almost all fields of medicines have been tried. But nothing really worked for him. My son does yoga and exercises which help him a lot.
Has it been difficult emotionally to cope with your son’s condition?
Initially yes – emotions played a strong role. But we got over that. There was no value or place for them. Emotions to a certain extent, I would say are needed to keep things in place. If you let your emotions control you, accepting certain truths and realities would become difficult. When there is work to be done the work has to be done. We do realize and understand the shortfalls. Sometimes yes…. some fleeting thoughts come to mind on What if….? But we have learnt to shrug them off and keep moving.
There are a lot of things to worry about but then there are a lot of things to look forward to as well.
